Happy 18th birthday Hayley!

Hayley bids farewell to childhood and continues along the path to a future full of hope and ambitions…

Monday evening, at the computer

“Seems funny I won’t be reading about my life anymore…” Hayley looks sad but then her face lights up. “But hey I’ll be able to drink alcohol!”

Yes, Hayley turns 18 this month and as she says goodbye officially to childhood, we say farewell to the regular blog. We know the National Deaf Children’s Society will be there for us for a few years yet, but our biggest battles have been fought.

Number 18 Candles Cake

Looking back at the first blogs seven years ago I’m blown away by how far we’ve come. Hayley was in primary school and we were just beginning our journey to get her on the road to success and wellbeing in a hearing world.

Realising what we were up against after she was diagnosed as deaf, what her needs were, how they’d be supported (or most often not). Learning how we’d have to battle for every scrap of help, but how the National Deaf Children’s Society would be by our side, including often literally with our children and families’ support officer in school meetings, to help get what Hayley needed.

Learning about everything, from how to re-tube Hayley’s hearing aids – after hours of me trying to push (!) the new tube in – to how to apply for special exam arrangements when she reached GCSE year. Discovering she could be entitled to a special educational needs (SEN) statement and getting expert help from the National Deaf Children’s Society to appeal.

I remember how exhausting and frustrating primary school was for a child spending every minute intensely straining to hear what’s being said, not just by teachers but in the noisy chaos of the playground. The tantrums at home after a long day coping, headaches from a noisy world amplified by hearing aids – a world that won’t take the time to make sure Hayley’s heard, or to wait for her to get her words out when she stumbles, her processing skills and other deaf-related issues, like word retrieval difficulties, halting her, tripping her up.

The world moving on without her – her being just that step behind and being left out because of it. The loneliness, tears and isolation, the constant struggle socially.

I remember the high hopes of an excited 11-year-old Hayley starting secondary school thinking everything would be amazing, but finding it harder than ever – the challenges of navigating around a huge site, never quite knowing where she should be (she once sat through a French lesson thinking it was German!).

Being ostracised and bullied, sobbing every night, begging to move schools. More support from the National Deaf Children’s Society encouraging the special educational needs coordinator (SENCO) to help find strategies to improve things.

Being diagnosed with autism, then later undiagnosed, no resolution to her difficulties, perhaps just a mix of deaf-related issues.

Being permanently at war with useless SENCOs, battling for more support in the classroom. Getting information from the National Deaf Children’s Society explaining about rights to extra exam time, presenting it to the SENCO who’d refused Hayley extra time.

Remembering the time her consultant finally said, after countless operations including three mastoidectomies to rid her of cholesteatomas in both ears, that she’d now only need an annual check-up – yay! And Hayley asking would she always have to wear hearing aids and him saying “Yes Hayley, but they’re part of you, part of who you are”. I could kiss that man.

Then there were National Deaf Children’s Society residential events we’d collect Hayley from and find her apparently inches taller, self-esteem boosted, full of the fantastic time they’d had trying new things, making friends.

Watching Hayley’s love of cooking develop, winning young chef contests, gaining confidence and a direction.

Last September, fresh beginnings at catering college. Not wanting to put her hair up because her new classmates would see her hearing aids, then going for it anyway.

The National Deaf Children’s Society helped us through it all, helped Hayley find herself, believe in herself. She recently shared a Facebook post which said: ‘If I had the choice I would choose to be deaf’. She’s come such a long way from the frustrated meltdowns – “hate my hearing aids, hate my stupid ears”.

Hayley talks of volunteering for the National Deaf Children’s Society, to help support other deaf children to blossom into strong, independent young people who can hold their heads high and embrace life, their future, just like any other young person. Just like Hayley has.

I’ll be honest, I’m feeling more than a little emotional as I write this. I’ll probably hit the alcohol with as much enthusiasm as Hayley will!

But right now I want to say goodbye to the regular blog (though we might post an occasional update) and thank you to the National Deaf Children’s Society for helping to fight Hayley’s battles so far, and for all they do to help deaf children and young people. The world, and their world, is a better place for it.

Advertisements

The balance between school work and activities

Hayley’s looking forward to the Christmas holidays after a demanding term in her final school year, while Tiger Mother is encouraging her to cut back on out of school activities.

Saturday morning, elbow deep in revision diaries and the family calendar

Hayley’s counting down the days until the end of term, getting more excited with every little chocolate reindeer that falls out of the windows in her advent calendar. It’s an exciting time evidently, Christmas, even for a 16-year-old – long may it last, I say.

31167_fabric_tree_advent_calendar

It’s also been quite intense at school so she’s looking forward to the holidays. The fact is it’s her final year at school – I can’t believe I’m saying it! – and the pace is hotting up. Lots of hard work is required. And earlier this month they started their mocks, which was quite a shock for her as the realisation hit how much effort is needed to succeed in next year’s GCSEs.

“Hayley’s got to knuckle down this school year”

Hayley’s got to knuckle down this school year and that means dropping – albeit very reluctantly – some of the many and varied out of school activities she usually does. There’s been a fair bit of wrangling over exactly what she can still fit in without it affecting her school work.

I’ve always encouraged her to take part in everything going – Guides, sports clubs, air cadets, work. She struggles socially due to her deafness and social communication difficulties, and having structured activities to go to has really paid off; it’s done her a power of good in terms of confidence, self-esteem and just learning about the world and how to be in it. It’s also equipped her with experience that might help her get a job in the future. But now there’s got to be a compromise between fun/experience and nose to the grindstone studying.

“Leadership experience will help her personal self-development”

She dropped Guides – easy because she was too old at 16. Ditto the local youth enterprise scheme, which gave her four hours’ paid work a week. But she is looking for a Saturday job, doing tennis every Monday and still going to air cadets twice weekly, though that’s under review. And now she’s decided to try Explorers, the follow-on from Guides and Scouts, which involves doing one night a week plus an extra evening as a young leader for Cubs. I can see the value of it though, as well as the fun. Leadership experience will help her personal self-development and possibly boost her job chances in the future.

“She’s not strong academically”

It’s just trying to decide together how far to tip the balance. She’s not strong academically, so has to try harder to get the minimum grades. But there again…

Aaargh, I don’t know!

Hopefully she’ll soon see for herself she can’t do it all and drop some activities of her own accord, it’ll be better if it happens that way. And I can always remind her about the NDCS Young Leaders courses next summer, which have an accredited leadership certificate – GCSE exams will all be over bar the shouting by then, so she’ll be able to throw herself into it to her heart’s content.

Deaf teen in young chef contest

Five minutes to go in the young chef contest semi-finals, but Tiger Mother’s anxious that Hayley won’t get her food out on time…

The tension is high, the stress levels producing waves in the air so thick you could slice them with a knife.

It’s a cook-off in the district semi-final of a national young chef contest and Hayley is in a huge kitchen, competing against nine other under-16s.

They each have to cook a fancy three-course meal for two, in under two hours.

We nervy parents and supporters are waiting beside a partitioned-off area where there are dining tables laid by each contestant, ready for them to serve up the food to be judged by the top chefs currently watching their every move in the kitchen.

Five minutes to go. And, while the other tables are now laden with the other contestants’ offerings, Hayley’s place settings are entirely empty; the little vase containing a flower that she’s placed on her waits, expectantly, all alone.

I won’t panic. We are a very last-minute family, skilled in achieving small miracles within tenths of a second tolerance.

The clock’s second hand jerks closer to the deadline. Four minutes.

Then Hayley emerges through the kitchen doors, soup bowls held aloft and I can feel the heat from her flushed cheeks as she steams past and sets them on the table.

She’s looking stressed but cheerful.

Two minutes later and she’s out again – it’s the main course, yes!

And she’s back again in less than a minute, running, desserts in hand and finally on the table. I want to faint from relief!

Now we wait as the chefs taste, confer and make their final decisions.

The young chefs are summoned in, we all gather round to listen. Only four contestants are to go through to the next round.

Hayley is not one of them.

A couple of the others seemclose to tears, one particularly overly confident boy  looks like a deflated soufflé.

I don’t need to watch Hayley’s face. I know she will be a good loser.  She’s just pleased that she did her best and got the three courses out.

“Hayley loves to cook”

Hayley loves to cook. With her hearing loss, I think the attraction of cooking is that it’s something she can do  without having to rely on ongoing instructions or complicated team communication.

She’s an old hand at this competition, it’s the fourth year she’s entered and the second year she’s got through to the district semi-final.

And she has the confidence and determination to pull it off – as well as the maturity and experience to take losing on the chin and offer congratulations to the others.

“She struggles socially and doesn’t get support others do from close friendship groups”

It wasn’t always this way, but lots of things have helped. As she struggles socially and doesn’t get support others do from close friendship groups, I always encourage her to join in everything she can.

NDCS events, local NDCS group outings, Guides and Air Training Corps (ATC) have all played their part in boosting her self-esteem.

We’re lucky enough to live in a community where people are supportive. And where people who know her have heard of her reputation for enthusiasm, determination and the willingness to get stuck into whatever’s going on.

It’s really starting to mark her out, define her. She’s recently been asked to babysit, and to help out at a function doing waitressing, and she’s even been invited to spend a day with a chef at a top local restaurant.

“We’re doing all we can to broaden her experience”

While the academic side of things remains an uphill struggle, and always a battle to get her the support she needs, I feel we’re doing all we can to broaden her experience and bolster her chances of a good career in the food world, which is her ultimate ambition.

Hayley for Master Chef, yay!

Activities for deaf teens with additional needs

14-year-old moderately deaf, fiercely independent Hayley’s off on her summer adventures.

The suitcases are out, the sleeping bags and camping mats are scattered around the floor. Hayley’s off on her summer travels. Not the rest of us, note, just Action Girl. Independence? If there’s one word that sums up Hayley, that’s the one.

It’s mostly down to the gutsy, determined and enthusiastic person that she is, has always been since she was a baby, a 4lb 3oz scrap of willpower that battled her way out of special care.

Before she could walk she used to be known as Tigger, with her strawberry blonde Mohican hair striped with ginger – the style (not the colour), the legacy of doctors shaving each side of her tiny head trying to find veins big enough to get an IV long-line into her. Careering along the street in her buggy, she’d bounce up and down excitedly with a big smile on her face for anyone and everyone.

From the word go that girl had an appetite for life.

“I’ve always encouraged all my kids to jump in and go for it”

I’ve always encouraged all my kids to jump in and go for it when interesting opportunities come their way, believing you should try everything you can. And this has become more pertinent to Hayley as time’s gone on.

When Hayley was diagnosed with hearing loss and later with autistic spectrum disorder (ASD), it gradually became evident in primary school that this double challenge caused her to struggle in various ways. Academically life is an uphill trudge for her. Apart from her hearing loss she has processing difficulties and a poor working memory, and all her set GCSE targets are C or below.

‘Incidental learning’ is another casualty – while her siblings all will mop up information around them like a sponge even when it’s not directed at them, things tend to bypass Hayley. And where they will learn to apply experience from one situation onto a different context, Hayley is far less able to do this.

“I’ve often worried how Hayley will fare as she grows up”

She also struggles socially with her own peer group, despite being incredibly sociable, a real people person.

So while both her brothers and her older sister – ranging in age from 12 to 35 – are very outgoing and lead busy social lives, things haven’t been so easy for Hayley. I know the others will find their way in life, but I’ve often worried how Hayley will fare as she grows up and what the future holds for her as an adult.

“Her social life has been near non-existent for much of the time”

Without a solid friendship group, her social life has been near non-existent for much of the time and her default is to bury her head in anything with a screen for hours on end – the laptop, the TV, iPlayer.

So one of my aims has been to try to push her into experiencing the world in as many ways as possible, to help her learn how to be with people and to cope with different situations. And Hayley has made that easy because she’s really game.

Her regular weekly activities include Air Cadets, Guides, tennis and trampolining. In the last year alone she’s done rifle shooting, abseiling, mountain walking, rock climbing, sailing, kayaking, a week’s sponsored march across the D-Day beaches of Normandy, a night-time hike with Guides plus other exciting arts and sporting activities on NDCS holidays and events.

Yes, there’s often a cost involved, but many of these things are more affordable when they’re subsidised through youth organisations. Some things, like the NDCS events, are even free.

Hayley’s also got herself a job two evenings a week working on a local youth scheme – which means she’s started horse riding lessons now that can contribute towards the cost!

Some of the events can be a chunk out of the housekeeping, but as far as I’m concerned, Hayley gets no other support, no benefits and is not statemented, so it doesn’t add up to a lot in terms of providing a useful learning therapy for life, as well as being fun and helping her to make friends.

I really think it’s all done her a powerful amount of good. She’s thrived on it, matured, and emerged stronger, more confident, more able socially, as well as becoming more independent than ever. She knows she can ask for herself if she can’t hear or there’s something she needs.

I’d say to any parent of a child with extra challenges, if you can, go for it.

Hayley’s come a long way

Proud Tiger Mother reflects on how far moderately deaf 14-year-old Hayley, who has autistic spectrum disorder (ASD), has come and her bright future ahead.

Firing up the car engine, I sit for a moment to watch the little figure in a black cocktail dress quickly cross the car park to the hall entrance, slightly wobbly on high heels.

A man in a dinner jacket greets her at the door. Hayley turns briefly to me – a swift wave, a nervous smile, but nevertheless a look that hisses ‘Mum, go now, I’m fine on my own’.

That’s my little girl. Except I’m just realising that she’s somehow become something of a grown up. As I drive away, I reflect on just what a long way she’s come, and almost every step of it a battle.

Ever since Hayley was born prematurely, a 4lbs 3ozs scrap, she’s been fighting.

In special care she battled with infections and other problems to be well enough to come home.

“Before her hearing loss was discovered, she fought to keep up”

At school, before her hearing loss was discovered, she fought to keep up. Learning instinctively to lipread, she’d watch her peers closely to see what she should be doing next – eyes like a hawk to compensate for her deafness.

Diagnosed with autistic spectrum disorder (ASD), she struggled to understand the complexities of the social swim. But she fought fiercely to stay afloat, to avoid sinking into the lonely depths of isolation.

She fought back to full recovery after every operation on her ears, from repeated grommets to three mastoidectomies, including procedures to rebuild her middle ear and ear drums.

From the off, Hayley has been battling. And NDCS has helped her, arming us with information to help her, providing her with weekends away and activity holidays where she’s flourished, understanding she’s not alone with deafness and helping her grow in confidence.

And here she is tonight, attending the annual dinner of her Air Training Corps (ATC) squadron where she’s been a cadet for 18 months.

The formal occasion is a far cry from the usual night exercises in which, head to toe in camouflage, they crawl about in the mud in the dark; or evenings spent in a hut learning about aeroplanes and how to clean a rifle; or dressed in formal ‘blues’ uniform for parade.

Hayley recently spent a week in snow-tipped north Wales, in the freezing temperatures of the coldest spring that we’ve just endured, mountain climbing, white water rafting, abseiling and more.

She impressed others with her determination to keep going, hour after hour of fairly relentless activities, climbing as far as the snow line, zip-wiring from the 70ft-high ledge of a slate quarry into the bone-chillingly cold water of a lake. That’s my girl (rather her than me!).

“What she lacks in height she makes up for in toughness”

When I see a photo of her marching with the other cadets, she’s half their size, looks more like a mascot, but what she lacks in height she makes up for in toughness and sheer do-or-die determination. Despite her difficulties, she’s game, up for everything.

Tonight will be a different kind of challenge. She’ll have to look and act like a lady, talk and dine like a lady – she may struggle more with this than the gruelling outdoor survival challenges…!

When Hayley joined the ATC I wondered in this blog how deaf-friendly it would be, voiced my concerns over how she’d cope away from family, school or NDCS activities, where her deafness and her autism are, to different degrees, understood and supported.

It was the first step into a more grown up world, a taste of how life would be for Hayley without a supportive presence to back her up.

Back then, a blog reader posted in response to say how brilliant cadets had been for her two children, one with severe glue ear, the other with moderate learning difficulties. It’d been supportive and accepting and helped both her children to be confident and sociable. And there was a comment posted by an ATC training officer, saying how it fostered independence.

I have to say I wholeheartedly agree. They’ve been great, not made a fuss or an exception for her but just quietly looked out for her, made sure her needs are catered for, been inclusive. If only every organisation was the same.

Hayley’s gained so much – skills, independence, confidence – and has gone from strength to strength.

And now as she starts to cross that threshold into adulthood, I’ve just had a glimpse of the future that once seemed possibly quite bleak and uncertain, filled me with fear for her – now it looks full of hope.